Inside I am screaming, I am angry to the core
I am so frustrated, I’m sure you know the score
Other MNDers will know just how I feel
Everyday it’s just the same, I’ve been given a raw deal
Things I was so good at, like organizing rooms
I can no longer physically do, it fills my life with gloom
My brain is fully active, with no deterioration
But that fact doesn’t fill me with elation
Asking other people to help me out with tasks
Should be fairly easy and not too much to ask
Why then do I feel that no-one seems to care?
That they’ll do the very minimum, sometimes I despair
I’m feeling very lonely and isolated, too
But when I go out I feel like an animal in the zoo
The other day my carer boldly asked of me
‘Is your disease catching ‘? How ignorant can one be?
Today I feel like ending what little life I have
I feel emotionally abused, certainly don’t feel love
What is left to give me cause to want to live?
Only my two daughters to whom, my love I give
This awful disease leaves me no desire to carry on
Only when I expire will the battle be won
Today I see very little reason to persist
I feel that I am living each day just to exist
Even services set up to supposedly help our plight
Seem obsessed with bureaucracy, and I have to fight
These people seem to forget what traumas we all face
‘Sorry, panel says, ’Nah’, it’s a bloody disgrace
Fortunately I do not always feel like I do today
Sometimes I can cope, there’s not much more to say
I certainly don’t see a tunnel filled with light
But I suppose that I won’t give up without a fight
This disease can fill you with roller –coaster emotions
Knowing there are no pills or any secret potions
To help us save our neurons from obliteration
There’ll be no miracle cure in ours or other nations ........
Let’s face it; for those of us with MND, life’s a bitch, and then you die!